I pull the door closed behind me and sit in the dark for just a minute thinking that I should go back inside, climb into my still-warm bed and pull the covers up to my nose and start over. Then I plug my ear-buds in and Don Henley and I take off for the nearly two mile push to the hospital.
November mornings can be cool by Phoenix standards. As I pass under the streetlights, I can see my breath. It’s such a rare occurrence here that I make a point of exhaling a big cloud under each light. The chill is welcome against the heat of the workout. I quietly hum along with Don and concentrate on the pavement in front of me. Push by push, I’m drawing closer to the place I don’t want to be.
Half a dozen songs later, the double doors whoosh open and I glide up to the reception desk. My rolling meditation has been successful. My breath is slightly labored from the exercise but my mind is calm. I wish the man behind the desk a good morning and introduce myself. “I’m Jennifer Longdon. I have a biopsy scheduled this morning.”
The “hurry up and wait” begins. I’m registered, change into a hospital gown and assessed. The IV only takes two pokes. Now that I’m prepped the nurse offers to get my companion from the waiting room. She’s startled when I tell her I’m alone. I assure her that I’ve arranged for transportation home and I give her the paper with the transport number and my info; I’ll be too drugged up to manage that myself when we’re through here. I plug in my earbuds, close my eyes and wait.
I don’t have to be alone. There are any number of people I could have asked to come with me. But then they’d be sitting here, trying to look calm while we make small talk or worry silently together. I’ve caused enough drama in my friends’ lives with my spinal cord injury. I just want to get through this and know what I’m talking about before I bring any more worry to my loved ones.
My doc comes in to say hello and go over the procedure. There are 2 sites we’re going to biopsy today. I like him. More importantly, I think I trust him. My paralysis and lack of sensation and other “normal” indicators complicate this diagnosis.
My inability to get onto an exam table at my PCP’s office, the difficulty in positioning me for standardized testing, the general wheelchair inaccessibility of medicine, finding an oncologist who will take a person with my history as a patient and my Medicare has added to the delay and the layers of angst.
As they wheel me back my nurse looks concerned. I joke “I can’t have cancer; I have a spinal cord injury. There’s a lifetime cap on tragedy. Right?” No one ever gets my humor. She gets a panicked look that I might seriously believe that. I smile and pat her hand. “It’s going to be fine. Either way. It’ll be ok.” I give her my iPod and glasses for safe keeping.
I’m finally positioned on the table. The room is cold. I’m staring up at a woodland mural on the light cover over my head. It’s supposed to be soothing. I focus on my breathing and stare at the mural. I try to identify the variety of trees; is that one an elm or a locust? They’re not at all alike but I can’t remember which is which right now.
My doc comes in, gives me an elbow bump of hello and then I’m unaware. As a precaution against autonomic dysreflexia, my doctor has decided to use twilight sedation.
When I wake up, my hands are folded around the call button. Don Henley’s crooning in my ears. I’d mentioned to the nurse that I hate the sounds of the hospital. She gave me my iPod to wake up to. My wheelchair is tucked out of the way across the tiny room. There’s always a moment of panic when I’m alone and my chair is out of reach. I don’t like feeling marooned. I close my eyes again, focus on my breathing and wait. The doc comes in, checks the bandages and my chart, tells me in a measured voice that there was a third site that he biopsied “just to be prudent.”
Suddenly, there it is.
I may have cancer.
No amount of mental discipline can make that go away. If it’s true; and that’s still an “if,” what does it mean to me?
I live a life with paralysis. Can I cope with cancer too? Is it treatable? Do I want to be treated? Is my life, in its current pain-filled form, worth prolonging? Am I willing to fight for even one more day? Would dying from cancer; if I have cancer and if I were dying; be preferable to dying from age in this paralyzed body?
I’m incapable of vomiting; those muscles are paralyzed, will that make chemo better or worse? How will chemotherapy impact my bones already savaged by fractures and osteoporosis? Even as fit as I am, there are times I’m not strong enough to push past obstacles or take on tasks. How will I manage in a weakened state of being? How will I get my sickened, weakened body to the toilet or to the kitchen? Having spent time in a nursing home, I refuse to ever return to one.
Finally, an aspect of my life that has nothing to do with SCI. Or does it? Could this cancer, if it is cancer, have been caused by all the xrays I’ve had post-injury? If I could feel those affected lymph nodes, would I have caught this sooner? If I were capable of getting on and off of an exam table, would I have gotten a more thorough exam earlier? Would it matter?
When this is over, where do I throw my time and energy? Continue on with SCI research advocacy or work to correct these access issues that allow a person living with paralysis to slip through the cracks?
What kind of crazy universe is this?
Can I really have cancer?
I have more questions than answers right now. So for now, I wait.
And try to remember to breathe.